Riding the TBI Pendulum

Riding the TBI Pendulum

The last couple of weeks have been good weeks. For close to two weeks, I’ve been able to coexist peacefully with my brain injury. That does not mean that there haven’t been challenges. I tire more easily than I did before my brain injury. Speech problems come at times both unexpected and inopportune. My tinnitus chimes on like a one-note orchestra set to repeat ad-infinitum, but it’s been an okay couple of weeks.

But I don’t kid myself for one moment. A couple of weeks with a respite from the worst of brain injury symptoms does not mean that I am abruptly recovering. It simply means that I’ve been able to string together a decent number of tolerable days.

I am now well into year seven living as a brain injury survivor. Every year that passes, in fact, every day that passes, I gain a better understanding of how all-encompassing brain injury is. Today, I have the benefit of time.

Unlike early recovery when most every day brought unexpected surprises, these days I know what I’ve got. Brain injury is a lifelong condition that some days will kick my backside, while on other days, it lies in wait, ever-present, waiting for an opportunity to creep back to the forefront and again remind me that I am compromised.

It’s a bit like riding a pendulum. On one side of the arc, life is okay and at times actually enjoyable. Hours go by, and I don’t even think about my injury. But like pendulums do, without fail, so begins the inevitable swing in the other direction. Sometimes, I feel it coming like a slow-motion wave of neuro-fatigue washing over me. At other times, the change is abrupt as vertigo instantly strikes, promptly removing my stability and at times making my “invisible disability” visible to those close to me.

I was recently out with a few friends on a bad TBI day. Many were acquaintances who I’ve known for years, most being post-injury friends. Like I do so often, I tried to hide how much I was hurting. I pushed through the hour spent with a few close friends. I thought I did a respectable job of keeping it all together until one of my friends called me the next morning.

“David, how are you doing? You weren’t yourself last night. Is everything alright?” he asked with a degree of concern that I found a bit disconcerting.

“Just a bit tired, that’s all,” I said in reply, not wanting to bring brain injury into the conversation. It wasn’t really a lie. It was more like a relationship preserver. Not everyone wants to hear about brain injury.

The night prior, the pendulum crashed fast in the wrong direction. You can never prepare yourself for the swing, it just happens.

But I see it now for what it is – just part of daily life with a brain injury. I really enjoy the days when my brain injury challenges seem less intrusive into my day-to-day life. And I’m getting much better at letting the tough days simply pass. And on those days, when the pendulum is buried deeply on the wrong side of the arc, I have faith that it will eventually swing back. And in that knowing, I realize that all will be well.

Comments (8)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I fell and hit my the back of my head on something solid...I think it was metal, but nontheless...I was told I had a mild concussion.  If this is mild, I'd hate to have a severe concussion, and I've heard of stories where people did have a severe concussion.  Some days, I'm ok for a few hours, then the next few hours I have no energy. Got a question....Is sleeping when you're tired the best thing to do, because I've heard that too much sleep will make you weak.  And how about computer time....how much is too much computer time?  I wear sun glasses sometimes, but I have so much to learn how this whole thing works.  I've been in this TBI thing since April 21st..2017.  Can I recover from this mild concussion?

My name is Jeff, I was hit in the back of the head and suffered a traumatic brain injury. I've been living with this for 3 years. I have spent many days in bed long stretches at a time. Just don't have the energy to even move some days. Don't want to eat. Just feel like I have the worst flu x 3. I think people understand the flu, the nauseating type where everything hurts. That's how I explain my symptoms. If you've never suffered a severe concussion, then you just can't understand. I run a small company, I am the only paycheck in my family. So through all the symptoms all the pain all the misery all the agony I kept working best I could. I did that for over two and a half years. Then the bottom fell out. I was always sleeping after I got home from work in bed early every day. This way I could get some rest and plunge into the next day. But my span of days spent in bed were growing longer. I slept the whole weekend away after working the week. Couldn't function didn't go anywhere with my family didn't want to communicate with anybody. Self-exile. Then my days kept getting worse the length of being in bed kept getting longer. Doctors just don't understand they look at you when you're telling them what's going on in your life they look at you is he crazy! I've had three MRIs done, there are small white spots scattered throughout my brain. No doctors are sure what they are. One says no big deal, one says mini strokes, one says possible blood vessels breaking from my intense migraines. Migraines wake me up like a bomb going off in my head when I'm sleeping. Never even had headaches before I was injured. Well maybe a few but nothing like I have now. The pressure is so intense sometimes in my head feels like somebody's pumping it full of air hitting me with a hammer and I'm just going to explode. My face swells and I look rather monstrous. My doctor says faces don't swell from concussions. So for the medical field. Please research brain injuries a heck of a lot more. And to all the doctors out there. When somebody's telling you something about concussions you need to listen. Because there's many stories like mine of going to a doctor and they look at you like huh. I realize it's not a broken arm a damaged limb a cut or bruise it's not something you can out right see. But on the inside our whole world is shaking. From day one when I was hurt I told everybody that something had changed in my eyes. Things were just not coming in the way they used to and it was very difficult for me to work with tools. And also climbing ladders. Finally after 2 years the doctor kept asking me if I had surgery on my eyes. I said no never. They sent me to a neuro ophthalmologist. He diagnosed me with Adie syndrome. It can be caused by trauma to the head. Now I have zero reflexes throughout my body. My eyes constantly hurt. My vision gets blurry by the end of the day every day. I just want to rip my eyeballs out of my head someday. It also makes your Achilles tendons tighten up every night, which makes walking during the night or in the morning very difficult.  Everything feels like it's swollen. On top of that I have cataracts in my eyes now also. Cataracts can also be caused by trauma. My eyes were normal before all this started. So my pupils are fixed or dilate very little. So they're stuck open and I get exposed to an enormous amount of light. Like having a flashlight stuck in your eyes most of the day. So if anyone out there is having problems with light issues. Make sure they check your eyes and if your pupils are different sizes, you could also have Addie syndrome. I had a quantitative EEG done recently. And that does show you where your brain is lacking. I was hit in the back of my head and neck and that is the area that controls your vision. What a coincidence. Guess what the doctors aren't smart enough to connect that. How little do they know and how much you need to learn. I am now not working. I am home bored out of my brains. Makes it even more difficult to deal with this. If I work I'm in bed for a week. So I'm just taking it easy trying to regain some stamina by walking and starting swimming. So all of us out there that are suffering from this don't give up fight back. It's a difficult Road, but I am hoping that if I work hard enough at it and learn to deal with it. I won't drive the car off the road. Good luck to everyone. My heart and my love goes out to everybody that suffer from this. The medical field needs to bring this out like cancer, Strokes, diabetes, and make this a national issue and start gaining funding for this. They need to see what's going on in our heads. Thank you for listening to me good luck to all. Send my love to all of you we all have something in common. It's not something we volunteered for. But it is a war I hope everybody wins.

I am 13+ years post-TBI.  There are good days, and some not so good days.  Here's hoping you have a lot more good days ahead...

I feel for you, I am almost two years into a TBI and it is your Blogs that help me to understand what is happening to me. Once I start to feel I am turning a corner bang, it happens the neurons decide they are going to have a party in my body and you never know what the theme will be and how long it will go. What we can do is enjoy and be thankful for the good days! I feel I have a better appreciation for those days than I ever have before. Blessings to you and keep writing!

David, Thank you so much for sharing your journey. We have started a concussion support group here in Ontario and I share all of your blogs. Your comments have really helped a number of people in our group! Thank you for putting down in words what many of them are experiencing.
Lynda (Cambridge Concussion Connection)

That is the way my husband is. He goes longer periods of time with like nothing has changed then on some days when he is tried pr in pain like he takes a few steps back in to tbi world. This is the hardest thing to happen to anyone.

I am learning as a wife of a TBI survivor that all you can do is let my husband have a bad day and be by his side if he needs me. When the good days come we enjoy them and make memories to carry us through the bad days.

Ah yes, things will be well. Instead of the pendulum swinging I say living with a brain injury is like playing chutes & ladders.  Ric J.